Monthly Archives: January 2015

Note: This was originally published as a chapter in the book “GAP: Autism, happiness and wellbeing” (British Institute of Learning Disabilities). It’s something that I’ve been waiting to post here for months and I guess a fitting place to leave off, since it’s kind of a summary of the my journey from diagnosis to present.

This will be my last post for a while. I’ve decided to put the blog on hiatus until my language problems are less, well, problematic. Writing even once a week is taxing my limited communication resources and as much as I’ll miss this, self-care has to be a priority for me right now. I hope to be back at some point, though I have no idea when. Until then . . .

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As a late-diagnosed autistic adult, people often ask me why I bothered seeking out a diagnosis. At age 42, I was happily married, the parent of a grown daughter, and a successful business owner. Because I was self-employed and about to complete my college degree, a diagnosis wouldn’t grant me access to additional services or accommodations.

While not necessary in any practical sense, my Asperger’s syndrome diagnosis was a turning point for me. It answered a question that I’d been asking myself since childhood: Why am I so different from other people?

That may seem like a trivial question, but when left unanswered for decades, it can become unsettling and haunting. Finally having an answer opened the door for me to do something I’d never been able to do: accept myself as I am.

Acceptance as Well Being Practice

When you grow up knowing that you’re different–and worse, suspecting that you’re defective–acceptance doesn’t come naturally. Too often, autistic individuals are acutely aware of the ways in which they don’t measure up to social norms. As a child, I knew that I wasn’t like most of the other kids and in the absence of an explanation, I assumed that I was simply doing something wrong.

Finally having an explanation for my differences forced me to challenge some long-held beliefs about myself. What if all these things that are wrong with me–I was still thinking more in terms of “wrong” than “different”–aren’t my fault?

Those first inklings of acceptance brought me immense joy. Decades of thinking I just wasn’t trying hard enough were cast in a new light. I wasn’t defective; my brain worked differently.

Getting from those nascent thoughts to a fully-realized sense of acceptance, however, was a hard and often nonlinear journey. My first instincts were to research all of the ways Asperger’s made me different. I thought if I could “fix” my aspie traits I’d finally feel like a “normal” person.

I set out to learn the intricacies of body language and making small talk. I was determined to master the correct way of using eye contact. I vowed not to make socially inappropriate comments, though I was still vague on what exactly that meant. This turned out to be an exhausting and ultimately futile undertaking.

The more I tried to fix myself, the worse I felt. The number of things I would need to learn to pass as neurotypical felt overwhelming; I was ill-suited to even the simplest of them. My husband played along as I quizzed him about social rules, eye contact, feelings, and body language. I read how-to books for aspies, etiquette guides, and even social skills books written for children on the spectrum.

Eventually I grew weary of feeling that I was failing at one thing after another. The self-consciousness and tension brought on by constantly monitoring my behavior for errors was demoralizing. With no end in sight, I gave up on my plan to fix myself.

Around the same time, I discovered a community of autistic adult bloggers. Reading about their experiences, I was surprised to discover how much I had in common with them. The books I’d read up until that point were mostly written from a male point of view and the few that were authored by women told extraordinary stories of success or lifelong struggle, neither of which I could relate to.

Autistic bloggers, on the other hand, seemed like regular people. Women like me, with average lives, writing about experiences that felt familiar. I left long, excited comments on the blog posts that spoke to me most strongly and was surprised to get friendly, thoughtful replies. There was a sense of community among the writers and their readers that was unfamiliar to me.

Too often in the past, when I related an experience in a group of people, even people who seemed remarkably similar to me, I was met with puzzled looks. It was a relief to talk about the “weird” parts of myself and have my tentative revelations met with virtual nods of agreement.

From other adults on the spectrum, I began to learn coping strategies and about the concept of neurodiversity. I learned about supports and accommodations, the social model of disability and why it’s important to presume competence. I learned that it was okay to struggle with things that come naturally to typical adults, that there was no shame in finding socializing difficult, that my autistic traits can be a source of strength.

I learned that acceptance could open the door to a strong sense of identity and pride, not only in what I’m capable of but in who I am.

What is Acceptance?

Acceptance, or more precisely self-acceptance, means unconditionally embracing yourself as you are. It wasn’t a concept I had given much thought to until I began learning about what it means to be disabled.

For most of my life, my view of myself was predicated on what I had achieved. I felt a strong need to succeed academically, professionally, athletically, and even socially, as a way of validating my self-worth. My fragile self-esteem was buttressed by a constant need to outdo myself.

My diagnosis came at a time when the demands of life were beginning to exceed my patchwork of coping strategies and workarounds. Not only was I finding it more difficult to excel at work, some days I was finding it hard simply to show up. It was clear to me that I needed new coping strategies and one of them would have to be admitting that I had needs and weaknesses.

One of the most difficult parts of understanding acceptance was the abstractness and the immediacy of it. Acceptance meant embracing myself as I am, in the present. It meant letting go of the idea that I would some day magically become a more competent, mature, socially adept version of myself. It meant acknowledging that I’m not perfect and, more importantly, I don’t need to be.

Building a Bridge to Acceptance

While there is a strong sense of before and after in my mind, self-acceptance didn’t happen quickly or accidentally. It was a nonlinear process, one that took nearly two years and a great deal of internal work.

When I was in the “before” place, unconditionally liking all the parts of myself, particularly the parts I found embarrassing or shameful or weird, felt impossible. If someone had said, “you need to accept yourself if you want to be happy,” I would have shrugged it off.

As a literal thinker, when I hear platitudes like “accept yourself,” I imagine acceptance happening all at once. I envision myself on one side of a chasm, mired in self-doubt and fear. On the other side of the chasm lies acceptance, waiting for me to leap across and embrace it.

Unfortunately, no amount of practice or effort will allow me to make that leap in a single bound. Thinking of it that way, it’s easy to give up before I even get started.

What I’ve discovered over the past two years, however, is that I didn’t need to leap. Instead, I needed to build a bridge across the chasm, one plank at a time, and walk over it.

That bridge turned out to be a series of specific steps that played important roles in helping me reach a place of acceptance. Looking back on my journey, I’ve attempted to identify the key “planks” in my bridge to acceptance.

Self-Knowledge

Self-knowledge is an essential part of self-acceptance. However, some autistic individuals are missing a key piece of self-knowledge: a diagnosis. As someone who made it well into adulthood undiagnosed, I had devised many alternative explanations for why I struggled with things that seemed to come naturally to my peers. None of my explanations were positive. Often they revolved around me needing to try harder or being fundamentally incompetent in areas like social skills and communication.

The self-knowledge that a formal diagnosis gave me was the first step toward self-acceptance. In the absence of the true explanation for my differences, I would have gone on creating my own explanations indefinitely. The peace of mind that I got from having a professional say, “you have Asperger’s syndrome” was invaluable. My diagnosis allowed me stop questioning and start educating myself about how and why my brain works differently.

Through my blog I’ve talked with hundreds of adults who are either late-diagnosed, pursuing a diagnosis or questioning if they might be on the spectrum. Nearly every one of them has expressed the need to know for sure if Asperger’s or autism is the answer to why they feel different. Those who have received a professional diagnosis often talk about their lives as I do, in terms of before and after, and the validation that a formal diagnosis brings.

Late-diagnosed adults also speak of wishing they knew sooner. So many of us grew up knowing we were different but not understanding why. Today, children are more likely to be diagnosed in early childhood, presenting an opportunity for them to grow up understanding their differences and how to cope with them.

Positive but Realistic Framing

When I first began reading books about Asperger’s for adults, the information I found was discouragingly negative. If marriage or parenting was mentioned at all, it was with the assumption that people on the spectrum were ill-equipped for both. Information on comorbid mental illnesses and high unemployment rates was plentiful but there were few stories of autistic people leading fulfilling adult lives.

I started to think that I was either an outlier or not on the spectrum at all. So many of the traits of Asperger’s fit me, but the overall profile of an adult aspie? That didn’t sound like me at all.

It was only when I discovered the blogs of autistic adults that I began to see my adult self reflected in the experiences of other people on the spectrum. Perhaps, again, it was my literal-minded approach that left me feeling grim after my initial research. The books I’d read made it sound like all autistic adults were lonely, unemployed, and depressed.

In reality, I discovered autistic adults who were happily married and unemployed, single parents with full-time jobs, college students with no interest in dating, business owners who were intentionally childless–every variation of adulthood imaginable, just like nonautistic adults.

Through reading the experiences of adults like me, I began to frame autism in a positive but realistic light. Doing so helped me find my place on the spectrum. Here were other autistic people, succeeding in some parts of their lives and struggling in others, and many of them seemed not just happy but content with being autistic. They talked openly about their difficulties. They weren’t in denial and didn’t gloss over the “ugly” parts of their lives. They seemed to genuinely embrace themselves, disability and all.

This was a revelation to me. Previously, when I thought of disabled people, the emphasis was on the “dis-” part of the word, on all of the things they couldn’t do. But here was a group of disabled people who were proud of what they could do and okay with the things they found hard or just plain couldn’t do.

Identifying Needs

Soon after realizing that I was likely on the spectrum, I read a blog post by Ariane Zurcher in which she used the phrase, “presume competence and respect my process.” That was my first exposure to the concept of presuming competence, which is a cornerstone of acceptance. However, it was the second part of that phrase that really drew me up short. I realized that I needed to respect my own process. In learning to do so, I’ve grown more confident in myself, which in turn allows me to trust myself on a deeper level.

A big part of acceptance has been honestly confronting the areas of my life where I need accommodations or supports and taking steps to actively meet those needs. By default, I’m the kind of person who is “fine.” No matter how good or bad something is going, I’ll tell you that I’m fine, I can handle it, I don’t need help.

There have been a surprising number of challenges in learning to identify my needs and ask for accommodations. At the most basic level, I had difficulty knowing when I was struggling with a task or situation–and still sometimes do. When I can identify a need, my instinct is to minimize or ignore it. The “I’m fine” instinct is deeply ingrained and persistent. Learning to admit that “I’m not fine” has been hard, but therapeutic.

Another challenge is that asking for accommodations identifies me to others as different. I’ve spent a lifetime trying to be not different–blending in rather than standing out. To overcome my discomfort, I’ve had to learn that it’s okay to have atypical needs and wants or to have different needs and wants than my peers.

Simply the act of including wants with my needs when talking about accommodations has required a shift in my thinking process. At first I thought of accommodations and supports as the bare minimum changes in my life that would allow me to what was required.

With the encouragement of the people in my life who want me to be happy and healthy, I was able to see that accommodations and supports can apply to things that I want as well. For example, if I want to have an enjoyable dinner at a restaurant, I might have to ask to be seated at a quieter table away from high traffic areas. If I want to be less overloaded at a family gathering, I might need to leave the party for 30 minutes of quiet time alone.

Much of what makes my life more enjoyable isn’t a need, per se. I could get by without certain accommodations, and I have for much of my life, but I know now that I don’t have to. Understanding how my brain works differently, has helped me identify many things, big and small, that I can do to minimize my discomfort and increase my enjoyment of life.

Acceptance has allowed me to think of myself as a person whose needs and wants have value and that has contributed significantly to my happiness.

Social Support and Community

Acceptance is something that happened within me and also to me. As I came to accept myself, I found the people around me becoming more accepting of my autistic traits. There was a give and take to the process, with me becoming gradually more myself and my family encouraging and embracing the changes in me. Because I’d spent so many years trying to minimize the signs of my Asperger’s, it was difficult at first to let go of my tendency to mask these traits.

Similarly, there were times when it was difficult for those around me to process the changes that were happening. Often it seems that our family’s first reaction to an autism diagnosis or disclosure is to reassure us that there is nothing “wrong” with us and nothing has changed. While it’s true that we’re the same person before and after an ASD diagnosis, it’s not quite that simple.

I was the same person post-diagnosis, but with a powerful new piece of self-knowledge. I felt as if I was seeing myself clearly for the first time. It was important to me that my family validate that feeling. If they’d dismissed my diagnosis and subsequent changes as insignificant, I don’t think I would have gotten to acceptance as quickly or perhaps at all.

In addition to family support, acceptance can be nurtured through community. For some of us, community comes in the form of in-person support groups or attending a school where many of the students are on the spectrum. Others, myself included, find support in autistic-friendly online spaces.

Being part of an autistic community opens up the possibility of having “me too” moments. When your experience of the world is markedly different from that of most people’s, you get used to odd looks and awkward silences in conversations that would otherwise be bonding opportunities. It’s hard to describe the relief I felt the first few times another autistic person said to me, “I do that too!”

Community can also be a place to find mentors. The language and practice of acceptance didn’t come naturally at first. Learning about the fundamental concepts of neurodiversity gave me access to a new way of thinking about myself. Gradually I moved away from comparing myself to a fictional norm and began thinking more about celebrating my differences. I will always be grateful to the community elders who took the time to answer my questions and gently nudge me in the right direction.

Opportunity for Growth and Change

Acceptance has helped me grow into myself. That feels like a paradox because the self that I’ve become over the past two years already existed inside me; I’d just become very good at concealing it. From childhood, I had a sense that there were aspects of me that were socially unacceptable. Little by little I learned to hide them, creating an increasingly false version of myself.

As I grew to accept that being different is a natural part of the human condition, I felt less compelled to hide the parts of me that openly identify me as different. I began to reclaim and take ownership of my autistic traits. For example, I stim more and have found that I’m more relaxed as a result. I no longer stop myself from skipping or bouncing down the sidewalk when I’m excited. My echolalia has become a source of joy, not just for me but for my family, who I often catch smiling at my wordplay.

I’ve also learned that when I listen to myself, to those wants and needs that I’ve been working so hard to recognize, I’m much happier. Rather than force myself to socialize in ways that I find uncomfortable, I’ve come to recognize that my social needs are different from the average adult’s and that’s okay. I can decline social invitations without feeling ashamed of my inability to be comfortable in larger groups or devote time to a special interest without feeling guilty about taking time for myself.

Equipping, Not Fixing

When I write about acceptance, it is not uncommon for a parent of an autistic child to counter that they aren’t just going to give up on their child, that accepting their autistic child as they are sounds like the equivalent of doing nothing.

This is where differentiating between fixing and equipping can be helpful. When I initially set out to fix all of my autistic traits, I had unconsciously created the idea that I was broken. Fortunately there was an alternative to the false dichotomy of fixing myself or doing nothing. As I began to identify areas where I wanted to change–to improve my quality of life and struggle less with day-to-day challenges–I was able to identify ways to better equip myself.

To remind myself how important this distinction was, I carried around a simple visual analogy: I was like a firefighter about to enter a burning building. To have the highest odds of success, I would need the right tools and protective gear. This analogy also turns out to be a surprisingly easy way to explain acceptance to those who see only the options of fixing versus doing nothing. No one would expect the firefighter to magically grow fire-resistant clothing and an oxygen tank (fixing); similarly, no one would send the firefighter into the building without his gear (doing nothing) or tell him to simply quit being a firefighter (giving up).

Learning new skills and building on our strengths equips us to cope with life’s challenges. At the same time, it allows us to continue to be our autistic selves. Fixing often has the goal of making autistic people indistinguishable from their nonautistic peers, creating the feeling of brokenness that I struggled with. Equipping, on the other hand, promotes acceptance and builds confidence by reducing day-to-day struggles and improving our quality of life.

Effects of Acceptance

Acceptance has had a number of positive long-term effects on my life. While each person’s experience will be different, the journey toward self-acceptance can:

Reduce self doubt by silencing the question of “what’s wrong with me?” and providing the foundation for creating a personal sensemaking narrative

Increase self-confidence through recognition of personal strengths and acceptance of differences and areas of difficulty

Build resilience to stress by encouraging the use of natural, intrinsic coping methods (i.e. stimming or special interests)

Promote self-care through increased understanding and acceptance of strengths and needs, and decreased feelings of self-denial or guilt

Foster a sense of belonging as a result of positively framing autism as a part of one’s identity

Conclusion

Of all the things I’ve done since being diagnosed with Asperger’s syndrome, accepting my self as I am has been both the hardest and the most fulfilling. I’d like to say that I’m done, that acceptance is like crossing a finish line, but it’s not that finite. Acceptance has been and continues to be a nonlinear process. Like the other aspects of my life that keep me healthy and happy–eating well, exercising, being mindful of my stress levels–acceptance is a daily practice and an essential part of my well being as an autistic adult.

A/N: This post is raw and more of a collection of thoughts than a coherent whole. I’m posting here as a signpost to myself. It’s definitely intended to be a comprehensive commentary on the subject of independence and disability.

I. Theory, Background, Questions and Concepts

What is the relationship between being dependent and being independent? Certainly not the opposites that we assume at first glance.

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There are common themes that you’ll encounter if you read enough autism parenting-related blogs and comments:

“My child is severely autistic and will never be able to live on their own.”

“My child is going to depend on me for the rest of their lives. They’ll never have the skills to live independently.”

The assumption that dependent and independent are opposing states is implicit in these types of statements. A person who lives on their own is considered independent by default; a person who needs the support of others to conduct their daily life is dependent. Little acknowledgement is given to the gray areas of reality.

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Consider this scenario:

My elderly neighbor lives alone.

Based on this statement, you’d assume he’s independent, right?

How about this scenario:

My elderly neighbor, who lives alone, is in poor health. He has daily visits from Meals on Wheels and a health aide. A maid service comes every other week to clean his house, a lawn service keeps up his yard, and various neighbors drop by daily to bring in his newspaper and check on him.

Is he still independent? Dependent? Something else we’ve failed to consider?

Oh, wait, I know what many of you will say . . . we’re all interdependent. This is true. Few of us make our own clothes or grow our own food or generate our own electricity. Even those of us who are able to cut the grass or clean the house might hire someone who can do a better job of it.

Does that mean some of us are more interdependent than others? That independence and dependence are fictional extremes where no one actually lives? Continue reading (In)Dependent→

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.